Conversation with the President of Inclusion Europe, Jyrki Pinomaa.
Listen to the podcast episode here.
With over 40 years of advocacy work, Jyrki Pinomaa has dedicated his life to fighting for the rights of people with intellectual disabilities and their families. In this podcast episode, we delve into Jyrki’s inspiring journey, his experiences as a parent, and the progress and challenges he has encountered along the way.
Jyrki Pinoma’s decades of advocacy work have undoubtedly left an indelible mark on the disability rights movement. His message of hope, unity, and perseverance resonates with countless individuals and families across Europe. Through Inclusion Europe and his collaborations with national organizations, Jyrki continues to inspire change, making a lasting impact on the lives of those affected by intellectual disabilities.
[1:30:0] The beginning of the story. A journey of commitment and passion
From his marriage to the birth of his children. One of them was born with an intellectual disability and his wife and him recognized from the very first moment that something was wrong. They didn’t get a real diagnosis until his son was more than 30 years old.
This is the reason why Jyrki chose to become Inclusion Europe’s president. But his journey actually starts when he decided to become an advocate: he wrote a six-page-long article and sent it to a magazine so they could publish it and realize that there was something to talk about.
[8:35:0] Jyrki joins Inclusion Finland
When Jyrki joined Inclusion Finland, he became the chairman within a year.
[9:43:0] When Jyrki realises that getting services for children with disabilities can be hard
When Jyrki and his wife had their fourth child, he also was born with a disability, the same type of the other one. At this point his wife was forced to be home with their children while Jyrki was the only one to go to work. But at the same time, they realize how difficult it was to get all the facilities that their disabled children needed. Also talking to the people seemed to be hard, since there was a very little information about disabilities. So at this point Jyrki felt the necessity to start advocating for his children and their rights.
[13:01:00] Start of advocacy
When Jyrki and his wife went to tell their families what they wanted to do, he was also called by Inclusion Finland to go and tell his story of living with two children with disabilities. From this first experience, schools and universities started to call Jyrkii to go and tell in such places what he was going through.
[15:46:0] The efforts of Jyrki arrives to the politicians
The interest people showed in hearing Jyrki was given by their willingness to hear the story of the family who was experiencing all that. Since that moment, Jyrki saw that something was actually happening, some changes were happening: he had the chance to talk to some politicians, who changed after four years and that was the moment of redo it all over again. So, for Jyrki it became soon a never ending job, because he was meeting always new people, especially politicians.
[19:52:0] The work that’s left to do for people with disabilities
Thanks to Jyrki’s work, people with intellectual disabilities are not hidden anymore, but there is still so much work to do until people with disabilities get what they need to live a decent life, made of the right assistance and services. It should be automatic for families with people with disabilities to receive devices and assistance. It obviously isn’t the same for every country, so it’s right to compare the different situations between countries, trying to see something positive in every of them.
[27:34:0] The application of the UNCRPD
One of the pivotal moments in Jyrki’s advocacy journey was the ratification of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
Despite the UNCRPD was ratified in many European countries and people know about it, they don’t seem to know that it is a proper national law, so it should be obeyed. That’s why there’s still a lot to do to see these people as equal citizens, not as people you feel to say “poor you” or something like that. We don’t want to see the difference but the equality among all. It is a battle also for the parents, because it’s them who fight for the rights of their children.
However, Jyrki acknowledges that the ratification of the convention is just the beginning, and there is still much work to be done to ensure its full implementation.
[49:31:0] Parents of children with disabilities
Speaking of parents of children with disabilities, they understand each other and help each other. But mostly, thanks to Jyrki’s work and divulgation, they understood how to get services and the assistance they need.
[54:07:0] The importance of Inclusion Europe and the other organizations
Inclusion Europe has a big resonance in speaking up for these topics, since it gathers many national organizations all together so their voices can resonate more. There’s always need of organizations made of policymakers and decision makers who can speak for people with disabilities. Their stories are quite the same: it all started with a few people who wanted to share their experiences with disabilities.
Changing attitudes towards disabilities is a key component of Jyrki’s advocacy work. He believes in moving away from the perception of individuals with disabilities as vulnerable and in need of pity. Instead, he emphasizes the importance of recognizing their abilities and providing them with the same opportunities and rights as any other citizen. Jyrki seeks to create a society where people with intellectual disabilities are seen as equal individuals, deserving of respect, inclusion, and support.